Cathy Geddes
I was diagnosed with Carcinoid Cancer-Syndrome back in June 1999 when I was 46. Had symptoms, fast heart rate and other problems misdiagnosed as panic attacks years before. My Family Doctor referred me to a gynaecologist. The gynaecologist opened one of his medical textbooks and thought that I may have a Pheochromcytoma, which is an adrenal gland tumour. He then referred me to an Endocrinologist who did urine 5HIAA and catecholamine’s test, blood TSH and calcium test, also blood glucose test. My 5HIAA was up. He then had separate liver and spleen scans done. Discovered that I had numerous tumours in my liver. I had a CT scan. No primary tumor was found. He told me it wasn’t Cancer.
My husband did some research on serotonin and carcinoid and told me about Susan Anderson’s web site. We purchased a computer, and then I began to research myself. Most of what I learned was from both Susan’s and The Carcinoid Cancer Foundation Web sites. I was then referred to a gastroenterologist. He prescribed Sandostatin Long Acting Release 10 mg, which was not enough so he upped it to 20mg. Then I saw an Oncologist. In the spring of 2005 my Oncologist called London Ontario.
In July that same year I had both Octreotide and MIBG scans with an appointment to see Dr. X later in July. I lit up for both scans. Surgery, Radio Frequency Ablation, and embolization treatments were not an option for me. My tumors were too close to the main artery. I had the Indium 111and MIBG treatments plus chemotherapy with 5FU, Epirubicin and Carboplatin.
I finished treatments January or February 2006. I experienced very slight shrinkage in tumors with stabilized tumor growth. My oncologist wanted me to start Alfa Interferon 2B injections. I started this treatment the end of April 2007.
I have been taken to hospitals in both Toronto and Saint John several times with Carcinoid Crises. I have flushing, low blood pressure, oxygen low and histamine release causing swelling face back of throat etc. I take rescue shots plus Zantac and an antihistamine. I still have them. I have a yearly echocardiogram, 5HIAA, ct scans and blood work done.
My hope is that the Interferon will keep the tumors stable.